I was diagnosed with morphea scleroderma two years ago at age eleven. I am thirteen now and life is not as normal as it was before I found out I had morphea. My life has become a hectic schedule of doctor appointments.
My principals and teachers refuse to give me any special treatments. I get five extra minutes to get to classes and that is it. They are getting tired of my absences and tardiness. I am only absent for doctor appointments. I don't think they are very fair to me. I try to be a normal teenager, but I can't; I don't even get to go to my friend's favorite skating rink because my joints hurt.
I just reread this and it sounds like I want sympathy. I am not asking for sympathy, I just want to know more people like me.
My head always hurts, my legs hurt and get stiff a lot, my "spots" are useless and they just get in the way of my life. I think my life would not be as troublesome if I just did not have morphea.
I just wish people would not make fun of me. I see people everywhere saying I have "spots" or that I "look like a cheetah, but I can't run as fast." I have been to various places where people act like I am an alien because I do not look like them.
I was at a swimming pool once when I was eleven and I had on a bikini because that happened to be what my mom bought me. There was this group of Latinos that were tanning not too far away from me. They were speaking Spanish and they kept looking at me. I could only make out a few words. They kept saying "that girl" and "the spots." I could tell that they were talking about me. Why do people act like that? I could just walk into WalMart and people look at me weird. I wish I could just sit at home and cry about it.
My doctors say I have the rarest case in Dallas. That is scary even if there are only 4 victims of scleroderma in Dallas.
I hope this will encourage people to e-mail me and ask any questions that you have. I am just hoping that since I cannot make them go away, I can let more people know about them.
New email address needed 11-03-06 SLE
Old Email Prefix: shutupt
Story edited 03-19-05
Story posted 03-21-05 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Types of Scleroderma
PDF Brochure: What is Scleroderma?
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.